With the night comes…

Ahh it is one of those evenings. I shouldn’t really blog. I should call a friend or watch a romcom or something like that to take my mind of things. But Ray is out tonight and I think it is too late to call my Mum (she would insist it is never too late to call her).

The girls have driven me a bit bonkers today and I had a short fuse. I snapped at them. Then ensues a not very friendly exchange of accusations followed by making up and going to bed but whereas peaceful sleep comes to my children pretty quickly, I am awake and brooding over the day. Or more precise the last days.

I have written a few times about Vega and her weight as well as her eating. It has been such an ongoing issue and over the last six or so months it has gotten worse and worse. A few weeks back the tummy aches she always had on and off, became very regular, ie daily, often accompanied by vomiting. I spoke to the doctors, consultants, nurses… pretty much anyone who dared listening. I felt I was at breaking point. On a very bad day that started with pain and vomiting and bad blood counts I did what had been unthinkable and unspoken up to that point. I called our oncology nurses and told them I needed to know if Vega was ok. I needed to hear from them that they would notice if something was going wrong, if Vega showed signs of a relapse. I needed the reassurance that they have this whole shitty thing under control. That they are not missing something. I needed to hand over the reigns because I felt exhausted from keeping everything in check and I was so very worried that if I don’t watch out, hoover like a hawk, they would miss it. I felt so let down from everyone for not being able to give me any answers about these stomach aches that I felt I had lost trust with them altogether.

Then almost four weeks ago Vega started Maintenance Cycle 4 and as per treatment plan we went to see our consultant at the Marsden. I think by then I was conveying enough desperation for her to listen to my concerns about weight, eating and pain in earnest. As if it just suddenly came to her she suggests Vega might have a stomach ulster and that sometimes eating helps to soothe the pain of such. Eh doh!

Why the heck has no one ever though about this before? I have quite literally been tearing my hair out these last MONTHS trying to figure out why Vega was so poorly with tummy ache and so obsessive with food. She now weighs almost as much as her seven year old sister and still has a few mobility challenges when I need to help out. Her weight has become unmanageable for me- I often feel like I am lifting a sack of wet sand, I guess that is because her general muscle tone is very weak and she is pretty limp.

We where referred to the Gastroenterologist at Kings and Vega was put on course of Proton Pump Inhibitors (anti acids) and- tada, we had a miraculous recovery. Tummy aches are almost gone and she is eating so much less! She will be on this medication for six-eight weeks now, then it is stopped and we shall see from there. She might need an endoscopy in the future but we will deal with it when it come to it.

At the same time as all this is going on I am not feeling so well myself. I had various issues this year but at the moment I suffer from sore joints. Some of my knuckles on my hands and feet are sore, swollen and inflamed, as well as my wrists. Some morning it was so bad I had to ask Ray to do up my trousers for me. I have been checked for various stuff, had blood tests but everything came back negative. Nothing complains the pain and inflammation so I am now waiting for an urgent appointment with the Rheumatology Department at- dum dum dummm- Kings. I am so desperate for some respite and have enjoyed swimming in the Lido this last week, I also desperately need some exercise, but my joints just seem to have gotten worse and worse. So it is not just the pain that is making me feel down but also the fact that I am not really able to do anything to get away from it all.

Last but not least, I took Alys to her 2 year developmental review this week and the Health Visitor kept quizzing me about Alys’ talking. She didn’t say anything while we were there, I guess that is not unusual but we have been referred to the Speech and Language Therapist because I reported that Alys definitly doesn’t use between 200-400 words. She is talking a lot of jargon- this is how they call the Toddler type babble but she is actually not saying many words. We have always found her talking quite amusing, it is very cute, but tonight I feel terrible. I have invested so much time and energy in dealing with Vega, especially in regards to this bloody stomach problem these last few months, could I have really completely missed that my 2 year old has a speech problem? Alys is a real challenge, I find it hard work to look after her. I always thought it feels like this because I have a lot on my plate. But now, after the comments of the Health Visitor, I am worried I that I mistook her frustration about communication with naughtiness.

All this is giving me headaches, and then I can’t sleep. Many people have commented on my last post “why” that they are worried I am blaming myself too much. That I am taking blame for things that are completely out of my control. Well I might be guilty for that once again! (Haha)

But I have also come to the realization that seeking blame in myself would be the easiest solution to my problems. At least in a way. If only I could identify the fault, my fault, then I can stop and change. Then I could prevent the cancer ever coming back. Or I could reverse my toddlers language hang ups.

Because what else can I blame? The most terrifying thought is that there is no blame, or at least not one that I can see. That all this is down to fate. And what would that mean? It means I must surrender to it. And I am not in the most acceptable kind of mood right now.